WOMANS RACER BACK TANK WORD CHOICES STRENGTH OR COURAGE
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Wednesday, May 14, 2014
SPINA BIFIDA ASSOCIATION OF KENTUCKY NEW DESIGN SB SHIRTS
WOMANS RACER BACK TANK WORD CHOICES STRENGTH OR COURAGE
WOMANS RACER BACK TANK BUTTON
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Tuesday, May 6, 2014
How to help YOUR family when your child is in the hospital
So I recently wrote the blog post "How to help a family with a child in the hospital" and got pretty good feedback. But in writing that I knew that this one was going to have to come next.
Obviously this blog is written mostly from the perspective of a planned hospital stay but some of it can go both ways. Some of it will seem like it contradicts the other post, but really....in the world of special needs it kind of has to....its just our life.
1. Tell your friends what you need.
Its hard I know. Its awkward. But there are people out there that mean it. You have to take people at their word and just let them and tell them. When they ask answer them. Let them know a meal, a babysitter, something to cheer up your child is what you need. People feel loved and a part of things when you allow them to love you and your family. You cant spend your life second guessing motives or intentions...just go with it. tell them
2. Meals
Don't expect the world to do it all and take over it all. Get on pinterest. Make a plan and get it done. Freezer meals. They are out there. They are easy. IF you plan. Do it. You will thank yourself. Just don't do it right before surgery. You will be exhausted. (learned that the hard way) Oh and. Don't try to keep with your perfect whole food meals, making bread from scratch junk. By some easy mac and cheese, prepackaged snacks and swallow your pride and breathe. It will be okay. It will help you get through and well that's what this is about.
3. The Other kids
spend time with them beforehand. Take them out on a quick date. Yes you have 500 other things staring you in the face, phone calls to make, things to plan. Don't miss this. They need it. They need the security of your time no matter how much you don't have it to give.
4. The home
Don't worry about it. Clean it before and then let it go. really, just stop. let the clothes pile. get paper plates, let the dust bunnies snuggle in. They will still be there. it will be okay. no one is going to judge you and well if they did....theyd judge you anyways.
5. Our tummy
get yourself some snacks, instant coffee, fruit, pack a cooler, call the hospital beforehand and ask about a family fridge or microwave. it will save you those moments of missing the dr because you ran down to the cafeteria. or more than likely just sat there being hungry. don't take a second mortgage out on your house because you had to eat every time in the cafeteria.
6. Visit
let the kids visit. have the daddy take turns. let the grandparents take turns. its good for everyone. really.
7. The mommy
Think before you speak. NO really. You have so much on you. Things are going to get to you. That fruit snack wrapper left on the floor will make you feel like your kids are the worst slobs and will end up in juvenile detention at the age of 10. let it go. don't yell at them. Think about it first. Would this be a big deal on a different day in a different situation. Same goes for the daddy. Don't fight over petty stuff that wouldn't really matter. Breathe. Check yourself. Make sure its worth discussing and saying something at this time. Chances are its not. chances are you just need sleep and your child home. Oh and....a girls night out. go out. laugh till you cry. do it. you need it. everything else can wait. (completely laughed till i cried)
8. The daddy
Go out on a date before. Chances are it will be a while until you get to do that again. a long long long while. So do it now. Make it a long one. Make it two. but go. Do one with a movie and no talking, no discussing medical stuff and just chill. And do a coffee night where all you do is talk and get it all out there. oh and during the hospital stay. Be there. Be ready. Laugh with us , cry with us. Distract us, listen to us. I know you have to do it all, but really you do. We know we ask too much, but we don't know how to do it without you. We need you to follow our hurricane of emotions and meet us there.
9.Learn
Take note. Every hospital stay. Every ER visit. Learn from what you need and what you don't. Simplify. Don't weigh yourself down with too much. EVERY VISIT I forget Tylenol and I always get at least one headache. take note. learn. next time I will not leave without TYLENOL!!!
I hope this helps. It helped me putting it down.
Obviously this blog is written mostly from the perspective of a planned hospital stay but some of it can go both ways. Some of it will seem like it contradicts the other post, but really....in the world of special needs it kind of has to....its just our life.
1. Tell your friends what you need.
Its hard I know. Its awkward. But there are people out there that mean it. You have to take people at their word and just let them and tell them. When they ask answer them. Let them know a meal, a babysitter, something to cheer up your child is what you need. People feel loved and a part of things when you allow them to love you and your family. You cant spend your life second guessing motives or intentions...just go with it. tell them
2. Meals
Don't expect the world to do it all and take over it all. Get on pinterest. Make a plan and get it done. Freezer meals. They are out there. They are easy. IF you plan. Do it. You will thank yourself. Just don't do it right before surgery. You will be exhausted. (learned that the hard way) Oh and. Don't try to keep with your perfect whole food meals, making bread from scratch junk. By some easy mac and cheese, prepackaged snacks and swallow your pride and breathe. It will be okay. It will help you get through and well that's what this is about.
3. The Other kids
spend time with them beforehand. Take them out on a quick date. Yes you have 500 other things staring you in the face, phone calls to make, things to plan. Don't miss this. They need it. They need the security of your time no matter how much you don't have it to give.
4. The home
Don't worry about it. Clean it before and then let it go. really, just stop. let the clothes pile. get paper plates, let the dust bunnies snuggle in. They will still be there. it will be okay. no one is going to judge you and well if they did....theyd judge you anyways.
5. Our tummy
get yourself some snacks, instant coffee, fruit, pack a cooler, call the hospital beforehand and ask about a family fridge or microwave. it will save you those moments of missing the dr because you ran down to the cafeteria. or more than likely just sat there being hungry. don't take a second mortgage out on your house because you had to eat every time in the cafeteria.
6. Visit
let the kids visit. have the daddy take turns. let the grandparents take turns. its good for everyone. really.
7. The mommy
Think before you speak. NO really. You have so much on you. Things are going to get to you. That fruit snack wrapper left on the floor will make you feel like your kids are the worst slobs and will end up in juvenile detention at the age of 10. let it go. don't yell at them. Think about it first. Would this be a big deal on a different day in a different situation. Same goes for the daddy. Don't fight over petty stuff that wouldn't really matter. Breathe. Check yourself. Make sure its worth discussing and saying something at this time. Chances are its not. chances are you just need sleep and your child home. Oh and....a girls night out. go out. laugh till you cry. do it. you need it. everything else can wait. (completely laughed till i cried)
8. The daddy
Go out on a date before. Chances are it will be a while until you get to do that again. a long long long while. So do it now. Make it a long one. Make it two. but go. Do one with a movie and no talking, no discussing medical stuff and just chill. And do a coffee night where all you do is talk and get it all out there. oh and during the hospital stay. Be there. Be ready. Laugh with us , cry with us. Distract us, listen to us. I know you have to do it all, but really you do. We know we ask too much, but we don't know how to do it without you. We need you to follow our hurricane of emotions and meet us there.
9.Learn
Take note. Every hospital stay. Every ER visit. Learn from what you need and what you don't. Simplify. Don't weigh yourself down with too much. EVERY VISIT I forget Tylenol and I always get at least one headache. take note. learn. next time I will not leave without TYLENOL!!!
I hope this helps. It helped me putting it down.
Saturday, May 3, 2014
How to help a Family with a child in the hospital
My son was recently in the hospital for a crazy 8 days. It was hard. Made even harder by the fact I had 4 other kids who still really needed taking care of.
But always, always without a doubt my friends and family step up to the plate. And thats how Im blogging. I'm not blogging in a "oh you people dropped the ball and should have.." its a "you people did this and well....it helped. we survived. what you did mattered" type of way.
To me those are the 2 most important across the board things. The rest well...they work for us and chances are if a friend of yours shared this then it might just work for them too.
3. Meals
Plan meals for the family left at home and then maybe a couple meals for the first couple days home. You dont know what they are facing. What type of medical stuff they are coming home with. Just because they are home doesn't mean its over....sometimes it means its just beginning. There are awesome sites out there like. www.bringthemameal.com that makes it easy to sign up for meals. But someone has to take the initiative to do this. Heavens knows we dont want to do this for ourselves. And for all you facebook friends or family out of town. You can sign up too. Did you know that lots and lots of places deliver. All it takes is an address and a little research. Jasons Deli, Pizza, Chinese Food. There are lots of options.
4. The Other Kids
Offer to watch the other kids. And maybe not just offer to baby sit but offer to help the other kids feel special and loved. There is NOTHING in the world like the guilt of leaving kids behind to care for one child. There is NOTHING like the worry that your children wont understand and will feel unloved. When someone loves you and your kids enough to spend time with them, watch them, take them somewhere special to eat there is NOTHING in the world that takes a little bit of that burden off your shoulders. BTW just babysitting is great also, but taking it that extra level makes all the difference when it comes to our hearts.
5.The Home
Get someone to clean their home. No not you! Dont even think about it. We will rush around and stress and clean before you even come to clean and pretend like its still a total mess. We need a company or someone that cleans homes that we dont know to come in and clean. Our house falls apart when we are caring
for our child and then when we come home we have 500 other things to catch up on and cleaning isnt one of them.
6. The Car
Its expensive. period. Gas is insane. a gift card for gas wouldnt make us cry at all.
7. Our Tummy
pack a bunch of snacks for us. healthy snacks. unhealthy snacks when we need to emotionally eat. bottles of water, instant coffee, anything you can think of. sometimes we sit there not able to eat waiting for a doctor to do his rounds. because chances are we will leave to go grab a bite in the cafeteria and that dr will show up...its inevitable. so we stay...and well we get hungry.
8. A Visit
A visit goes a long way...but please please dont make it a long visit. We need to know we are thought of and we are cared about. Our child needs a distraction and we need to breathe a little. Come visit us. Dont be scared. Bring a small present from the dollar store or have your kids draw some cards, but come. Dont stay away out of fear of being a bother. Come see us. We need it more than we know.
9. A phone call, text or facebook message
Maybe you cant visit. Maybe your schedule is crazy or you cant handle life right now. (we get it)Or maybe you are out of town. Give us a call. dont forget about us. and dont let us feel forgotten. Dont let fear of interrupting stop you. If we cant answer we wont. If we cant respond, thats okay. Knowing you care and took the time it makes the difference. Feeling forgotten is way worse than feeling interrupted. And we might not ever respond. We might forget but please dont think that in that moment we didnt care. because we did.
10. The Mom
We have the weight of the world on us and we can be a mess. we might get our feelings hurt. we might snap. We might cry. We might laugh. We are a hot mess. Love us anyway. Sneak in some real food to the hospital. A salad or fruit. They charge $1 for one banana in the cafeteria!!!! I just cant do that!! We will tell you not to. We will tell you we dont need anything. Do it anyways. We will love you for it.
you thought i was gonna stop at 10 right??
11. The Dad
The all forgotten individual in this. The one driving back and forth 500xs to and from the hospital. Relieving mom from hospital duty, coming home and being fun dad, trying to keep the house in order so mom doesnt fall apart when she comes home. (never happens I swear) Hes forgotten. Everyone brings the mom stuff, prays for the mom, hugs the mom. Dont forget the daddy. He's trying to do it all. Grab him a book, show up and tell him to go get a soda, bring him a soda, get a comedy dvd for him. Just dont forget the daddy.
So thank you. Thank you to those who care. who love. who try. for those who do this journey with us. who carry our burdens and who make them lighter. We need you. We couldnt do it without you.
But always, always without a doubt my friends and family step up to the plate. And thats how Im blogging. I'm not blogging in a "oh you people dropped the ball and should have.." its a "you people did this and well....it helped. we survived. what you did mattered" type of way.
So
How to help a family with a child in the hospital.
1. Dont ask what they need.
We have no idea. We cant put two words together and still make sense, there is no way we can come up with a list of what will be helpful. (except for now after the fact) We know we need help but we have no idea what will be helpful. And we have no idea what you really mean when you offer help. Did you mean watch kids? Did you just say it to be nice? Did you mean a meal? No idea....terribly awkward. We hate it.
2. Be Specific
Tell us what you want to do to help. Be specific and mean it. If you dont want to do something then dont ask or volunteer. We know when you mean it. Just like you know when we mean it when we offer. We truly dont want you over extending yourself and your family and your finances to help us. It makes us feel guilty and rotten and well....we already have 500 other feelings going through us right now....we cant handle more. only help in a way you can.
To me those are the 2 most important across the board things. The rest well...they work for us and chances are if a friend of yours shared this then it might just work for them too.
3. Meals
Plan meals for the family left at home and then maybe a couple meals for the first couple days home. You dont know what they are facing. What type of medical stuff they are coming home with. Just because they are home doesn't mean its over....sometimes it means its just beginning. There are awesome sites out there like. www.bringthemameal.com that makes it easy to sign up for meals. But someone has to take the initiative to do this. Heavens knows we dont want to do this for ourselves. And for all you facebook friends or family out of town. You can sign up too. Did you know that lots and lots of places deliver. All it takes is an address and a little research. Jasons Deli, Pizza, Chinese Food. There are lots of options.
4. The Other Kids
Offer to watch the other kids. And maybe not just offer to baby sit but offer to help the other kids feel special and loved. There is NOTHING in the world like the guilt of leaving kids behind to care for one child. There is NOTHING like the worry that your children wont understand and will feel unloved. When someone loves you and your kids enough to spend time with them, watch them, take them somewhere special to eat there is NOTHING in the world that takes a little bit of that burden off your shoulders. BTW just babysitting is great also, but taking it that extra level makes all the difference when it comes to our hearts.
5.The Home
Get someone to clean their home. No not you! Dont even think about it. We will rush around and stress and clean before you even come to clean and pretend like its still a total mess. We need a company or someone that cleans homes that we dont know to come in and clean. Our house falls apart when we are caring
for our child and then when we come home we have 500 other things to catch up on and cleaning isnt one of them.
6. The Car
Its expensive. period. Gas is insane. a gift card for gas wouldnt make us cry at all.
7. Our Tummy
pack a bunch of snacks for us. healthy snacks. unhealthy snacks when we need to emotionally eat. bottles of water, instant coffee, anything you can think of. sometimes we sit there not able to eat waiting for a doctor to do his rounds. because chances are we will leave to go grab a bite in the cafeteria and that dr will show up...its inevitable. so we stay...and well we get hungry.
8. A Visit
A visit goes a long way...but please please dont make it a long visit. We need to know we are thought of and we are cared about. Our child needs a distraction and we need to breathe a little. Come visit us. Dont be scared. Bring a small present from the dollar store or have your kids draw some cards, but come. Dont stay away out of fear of being a bother. Come see us. We need it more than we know.
9. A phone call, text or facebook message
Maybe you cant visit. Maybe your schedule is crazy or you cant handle life right now. (we get it)Or maybe you are out of town. Give us a call. dont forget about us. and dont let us feel forgotten. Dont let fear of interrupting stop you. If we cant answer we wont. If we cant respond, thats okay. Knowing you care and took the time it makes the difference. Feeling forgotten is way worse than feeling interrupted. And we might not ever respond. We might forget but please dont think that in that moment we didnt care. because we did.
10. The Mom
We have the weight of the world on us and we can be a mess. we might get our feelings hurt. we might snap. We might cry. We might laugh. We are a hot mess. Love us anyway. Sneak in some real food to the hospital. A salad or fruit. They charge $1 for one banana in the cafeteria!!!! I just cant do that!! We will tell you not to. We will tell you we dont need anything. Do it anyways. We will love you for it.
you thought i was gonna stop at 10 right??
11. The Dad
The all forgotten individual in this. The one driving back and forth 500xs to and from the hospital. Relieving mom from hospital duty, coming home and being fun dad, trying to keep the house in order so mom doesnt fall apart when she comes home. (never happens I swear) Hes forgotten. Everyone brings the mom stuff, prays for the mom, hugs the mom. Dont forget the daddy. He's trying to do it all. Grab him a book, show up and tell him to go get a soda, bring him a soda, get a comedy dvd for him. Just dont forget the daddy.
So thank you. Thank you to those who care. who love. who try. for those who do this journey with us. who carry our burdens and who make them lighter. We need you. We couldnt do it without you.
Monday, April 7, 2014
Spina Bifida Shirts 2014
I dont know about you but these shirts speak volumes to me. They shout things Ive wanted to shout from the roof tops.
And this one!!
Would you like to order one of these? Would you like to use these to help with a fundraiser? Paypal Buttons will be available on the side bar. All these shirts will be pre order. Which means shirts will be made after 4 weeks of ordering is complete. Baby sizes will be available shortly. The ordering will begin APRIL 15. If you are interested in using these for a fundraiser please email me with the month you would like. Only one organization per month. If you would like to do a personal fundraiser to help with medical equipment, therapy or other similar things please email what you are raising for and we will help you with the details. kari.leannthomas@gmail.com
Wednesday, March 12, 2014
From A Girl Named Charlie: What I Know
Before I ever had kids, I used to walk past the severely and profoundly disabled class on the way to my room every day and think, Man! It really takes a special person to be a special ed teacher for those kids. I admired their dedication and never considered just how much physical work went in to caring for those students day in and day out. I became friends with one of the severe and profound teachers and was enlightened at all the preparation that goes into the curriculum for students with major physical and mental disabilities. It astounded me. I was in awe. I couldn't imagine what the parents of these students dealt with after hearing what the teachers did for them. I remember thinking, There's no way I could ever do that! It really takes a special person to care for such special children. God bless them! Parents of special needs children are extra tough. I can't even imagine how strong they must be to deal with their child's disability on a daily basis.
I want to slap my former self across the face.
Ten years later, I am the mother of a child with special needs. I hate it when people tell me they don't know how I do it or they "couldn't do it" or "God only gives special children to special parents" because it's simply not true. After two years of raising and caring for a child with non-typical medical needs, here's what I know about myself:
1. I'm weak. I realize this and I'm okay with it. When Liv was first diagnosed, I thought it was so important that I appear strong and pulled together. I managed to talk about Spina Bifida and all it entailed with clear eyes and a steady voice, but inside I was a shaky, crumbling, fragile mess. I constantly heard people say that God won't give you more than you can handle, but I questioned whether or not I could handle her diagnosis. I didn't feel equipped, emotionally or intellectually, and sometimes I still don't. The prospect of an impending surgery or new care routine still makes my head spin and my heart race and the fight-or-flight instinct to kick in. Sometimes I want to take my family and run away from Spina Bifida, and if there were aspects of it that weren't potentially life-threatening (like shunt and kidney issues), I think I would.
2. I'm more parts "normal" and "frazzled" and less parts "amazing" or "dedicated" or "(fill in the blank)." I'm normal because I'm a married, working mother with two kids and a moody dog. I'm frazzled because, well, I'm a married, working mother with two kids and a moody dog. Thankfully, right now SB tends to take a back seat to everyday life, and for that, I'm extremely grateful. If you consider being almost eight months pregnant and getting myself and two kids dressed and out the door every morning on time "amazing," I'd be okay with that. Otherwise, I'm just a mom who loves her kids, SB or not, and does whatever it takes to ensure they are happy and healthy and taken care of. That's the type of dedication required of every mother who cares.
3. I'm pretty happy. This was the scariest prospect for me when Liv was diagnosed, and something I'm so ashamed to admit. October 6, 2011 was (and still is, if we're being honest) the saddest day of my entire life. I have never, ever, ever felt a deeper despair. I didn't know I could feel such crushing grief for someone I'd never even met. When I pictured our lives with SB, I didn't see happiness. I saw pity from others, endless medical problems, and struggle, struggle, struggle. A time-machine would have been nice, or maybe a visit from the Ghost of Christmas Future, to show me that not only would we indeed laugh again, but that it would come much sooner than we thought, long before Liv was even born.
4. Most of the time, I only get half of my stuff done. This is kind of in reference to the whole "I don't know how you do it all" sentiment that I hear a lot. It seems like I take Liv to the doctor all the time because she has so many specialists, which would be enough to boggle any busy person's mind. Truthfully, the only doctors she sees are neuro, urology, and an orthopedic specialist. Her pediatrician visits are growing fewer and farther between now that she's two and the developmental pediatrician is once every six months. Most of the time, my house is half clean, my laundry less than half done, and the dishes are partly put away. I justify this by referring to something I read on Facebook that said, "Cleaning house when you have kids is like trying to brush your teeth while eating Oreos."
6. Day to day life around here is pretty routine and boring. And I'm okay with that. Our days pretty much look exactly the same as the one before, with the occasional adventure sprinkled in. I'd rather be living an uneventful life as far as SB is concerned than a colorful roller coaster ride that takes thrilling twists and turns, always leaving us guessing where we might end up next. We're just doing life, raising our girls the best way we know how, learning along the way.
I want to slap my former self across the face.
Ten years later, I am the mother of a child with special needs. I hate it when people tell me they don't know how I do it or they "couldn't do it" or "God only gives special children to special parents" because it's simply not true. After two years of raising and caring for a child with non-typical medical needs, here's what I know about myself:
1. I'm weak. I realize this and I'm okay with it. When Liv was first diagnosed, I thought it was so important that I appear strong and pulled together. I managed to talk about Spina Bifida and all it entailed with clear eyes and a steady voice, but inside I was a shaky, crumbling, fragile mess. I constantly heard people say that God won't give you more than you can handle, but I questioned whether or not I could handle her diagnosis. I didn't feel equipped, emotionally or intellectually, and sometimes I still don't. The prospect of an impending surgery or new care routine still makes my head spin and my heart race and the fight-or-flight instinct to kick in. Sometimes I want to take my family and run away from Spina Bifida, and if there were aspects of it that weren't potentially life-threatening (like shunt and kidney issues), I think I would.
 |
| Me that first night after diagnosis |
2. I'm more parts "normal" and "frazzled" and less parts "amazing" or "dedicated" or "(fill in the blank)." I'm normal because I'm a married, working mother with two kids and a moody dog. I'm frazzled because, well, I'm a married, working mother with two kids and a moody dog. Thankfully, right now SB tends to take a back seat to everyday life, and for that, I'm extremely grateful. If you consider being almost eight months pregnant and getting myself and two kids dressed and out the door every morning on time "amazing," I'd be okay with that. Otherwise, I'm just a mom who loves her kids, SB or not, and does whatever it takes to ensure they are happy and healthy and taken care of. That's the type of dedication required of every mother who cares.
3. I'm pretty happy. This was the scariest prospect for me when Liv was diagnosed, and something I'm so ashamed to admit. October 6, 2011 was (and still is, if we're being honest) the saddest day of my entire life. I have never, ever, ever felt a deeper despair. I didn't know I could feel such crushing grief for someone I'd never even met. When I pictured our lives with SB, I didn't see happiness. I saw pity from others, endless medical problems, and struggle, struggle, struggle. A time-machine would have been nice, or maybe a visit from the Ghost of Christmas Future, to show me that not only would we indeed laugh again, but that it would come much sooner than we thought, long before Liv was even born.
 |
| See? She's happy. I'm happy. We're all so freakin' happy! |
4. Most of the time, I only get half of my stuff done. This is kind of in reference to the whole "I don't know how you do it all" sentiment that I hear a lot. It seems like I take Liv to the doctor all the time because she has so many specialists, which would be enough to boggle any busy person's mind. Truthfully, the only doctors she sees are neuro, urology, and an orthopedic specialist. Her pediatrician visits are growing fewer and farther between now that she's two and the developmental pediatrician is once every six months. Most of the time, my house is half clean, my laundry less than half done, and the dishes are partly put away. I justify this by referring to something I read on Facebook that said, "Cleaning house when you have kids is like trying to brush your teeth while eating Oreos."
 |
| This is crap I did not get done. |
6. Day to day life around here is pretty routine and boring. And I'm okay with that. Our days pretty much look exactly the same as the one before, with the occasional adventure sprinkled in. I'd rather be living an uneventful life as far as SB is concerned than a colorful roller coaster ride that takes thrilling twists and turns, always leaving us guessing where we might end up next. We're just doing life, raising our girls the best way we know how, learning along the way.
Wednesday, February 12, 2014
From A Girl Named Charlie: Upon Diagnosis
If you've somehow stumbled upon this blog after doing a Google search, welcome!
You may have just been told that your child has a neural tube defect called Spina Bifida. Or maybe you're the family member or friend of someone who has just received this devastating news. Either way, I'm so glad you're here, even if it had to be under these circumstances.
When my doctor said, "There were some abnormalities on the ultrasound that are consistent with Spina Bifida," I felt like I was going to die. I wanted to. I quite literally felt like the whole world had stopped and thrown me into a raging whirlwind of fear, grief, and uncertainty. For two days, I wept, prayed, mourned and wept some more. I grieved the loss of the baby I thought I was carrying and instead felt pregnant with a diagnosis rather than a tiny, little person. I craved the days of my pregnancy before the diagnosis with an unimaginable desperation. For the first time in my life, I cried out in my sleep, waking myself up multiple times that first night sobbing. I went to bed with a headache and woke up with a migraine.
And then my husband, to whom I will forever and ever credit with pulling me up out of my funk, said this to me:
You may have just been told that your child has a neural tube defect called Spina Bifida. Or maybe you're the family member or friend of someone who has just received this devastating news. Either way, I'm so glad you're here, even if it had to be under these circumstances.
When my doctor said, "There were some abnormalities on the ultrasound that are consistent with Spina Bifida," I felt like I was going to die. I wanted to. I quite literally felt like the whole world had stopped and thrown me into a raging whirlwind of fear, grief, and uncertainty. For two days, I wept, prayed, mourned and wept some more. I grieved the loss of the baby I thought I was carrying and instead felt pregnant with a diagnosis rather than a tiny, little person. I craved the days of my pregnancy before the diagnosis with an unimaginable desperation. For the first time in my life, I cried out in my sleep, waking myself up multiple times that first night sobbing. I went to bed with a headache and woke up with a migraine.
 |
| Liv 20 Weeks October 6, 2011 |
And then my husband, to whom I will forever and ever credit with pulling me up out of my funk, said this to me:
"Cheer up, Charlie. This isn't the end of the world."
That was all I needed to hear. I slowly began putting on my game face and quickly determined that knowledge is indeed powerful. With that being said, here is what we did in the immediate days, weeks, and months following Liv's diagnosis that were integral in shaping our positive attitudes and inspiring confidence in our ability to be parents to this precious little person:
1. Immediately upon diagnosis, we went to Maternal Fetal Medicine where the presence of SB was confirmed by a perinatologist. This is just a fancy name for Specialist OBGYN. Don't be intimidated.
2. After getting a confirmation diagnosis, we then asked to be referred to a Pediatric NEUROSURGEON. This is important because many times people are mistakenly referred to a Pediatric Neurologist, which is totally different. They know nothing about outcomes with SB. Trust me.
3. Once we spoke to the Pediatric Neurosurgeon, I began researching and reading, absorbing everything I possibly could about Spina Bifida. I bought two books on Amazon: Children with Spina Bifida: A Parent's Guide and another memoir written in the early 90's by a father of a son wtih SB. It wasn't nearly as helpful, so I'm not going to bother sharing the title. Here are some other invaluable resources to check out:
- Spina Bifida Kids (A group hosted on Babycenter.com)
- The Spina Bifida Association of America (You can find the website for your local SB chapter on this site as well)
- Spina Bifida Connection (This group is geared more towards adults with SB but also contains some valuable threads regarding kids and SB)
Spina Bifida Kids on Babycenter's website was by far the most useful resource for me. Many of the parents who post have blogs and usually you can find them in the signature lines of each person when they post a message or comment. This is where I ultimately found hope and confidence that life with SB wasn't going to be the awful, sad experience I initially thought.
4. Ask questions. Write them down. You'll forget them if you don't. You'll wake up in the middle of the night and kick yourself because there was something you wanted to know that you forgot to inquire about.
5. Put together a binder. Inside it, you'll want to keep any information, handouts, confirmations, reports, anything the doctors give you. Eventually, you'll see a multitude of specialists and you'll want to keep all that stuff straight. Plus, you can put your questions in here and carry it all with you to your appointments. Did I mention you need to write down your questions as you think of them?
6. Don't be afraid to kindly ask your doctors, especially the neurosurgeon, to explain things to you in a different way. Sometimes they forget that not everyone is familiar with terms like "corpus callosum" and "myelomeningocele." I've found that they are always happy to re-explain things to me if needed. (Which it probably won't be since you'll be a researchin', technical-jargon usin' fool in no time.)
There were other things we could have done that, in hindsight, would have given us even more reassurance about the future of our sweet little Liv. We didn't contact any other parents of little ones with SB. At the time, it was just too overwhelming. I wasn't ready to face an actual person with this defect when I didn't quite feel capable of dealing with it myself. Nineteen months into this journey, I wish I would have. I really think it would have helped. Reaching out to other members in our immediate community through our local Spina Bifida chapter would have also given usa good support network on which to lean during my pregnancy.
I hope you've somehow been given some measure of comfort by reading this, no matter who you are or where you're at on your SB journey. If this is all just starting for you, please remember:
Everything is going to be okay. I promise. It will.
Love,
Tuesday, February 11, 2014
Pets With Spina Bifida
My daughter was diagnosed with spina bifida when I was 30 weeks pregnant and had an extra ultrasound to check her growth. There hadn't been anything unusual noted on her 20 week anatomy scan, so I felt blindsided. I didn't have any sense of what spina bifida was or what it would involve. Now five years later, I have become a pro at explaining spina bifida to family, friends, and teams of therapists and teachers at IEP meetings.
A couple years ago, I came across the Facebook page of a little cat who has spina bifida. I was surprised that cats could have spina bifida, because I never really considered it. None of my research into how spina bifida would impact my daughter even mentioned that it wasn't a condition that is unique to humans. Further googling revealed that dogs can also be born with spina bifida, and some of them had their own Facebook pages too. My daughter was delighted to see animals wearing diapers and scooting around in carts, because they had spina bifida just like her!
Now we have a new member of our family!
This little sweetheart is Soot. My daughter named her Soot Gremlin after the little soot gremlins from Totoro, because like her namesakes, Soot is tiny, black, sneaky, and can blend in wherever she hides. My daughter finds these qualities admirable. In Totoro, the soot gremlins live in the shadows in an abandoned house and move away when they decide the new family that moves in is nice. Soot has decided that we are nice, but rather than moving away, she is spending far less time hiding.
Soot is a manx, and she has spina bifida too! The mutation that leads to the shortened or absent tails in manx cats can also cause spina bifida or other spinal abnormalities. In dogs, spina bifida is most common in bulldogs. Dogs and cats of any breed can be born with spina bifida, but it is very rare. Just like humans, the severity varies with each case depending on the amount of nerve involvement.
Soot has spina bifida occulta, which is the least severe form of spina bifida. She can use the litter box and walk independently, but her back legs are weak so sometimes she hops and wobbles, especially when she is tired. Even pets with more extensive special needs can live wonderful lives too!
We are so happy to have Soot as part of our family. My daughter loves having a pet who shares having spina bifida.
I set up a page Soot the Kitty With Spina Bifida to help raise awareness of spina bifida in humans and in pets. Neither Soot nor my daughter let spina bifida stop them!
A couple years ago, I came across the Facebook page of a little cat who has spina bifida. I was surprised that cats could have spina bifida, because I never really considered it. None of my research into how spina bifida would impact my daughter even mentioned that it wasn't a condition that is unique to humans. Further googling revealed that dogs can also be born with spina bifida, and some of them had their own Facebook pages too. My daughter was delighted to see animals wearing diapers and scooting around in carts, because they had spina bifida just like her!
Now we have a new member of our family!
This little sweetheart is Soot. My daughter named her Soot Gremlin after the little soot gremlins from Totoro, because like her namesakes, Soot is tiny, black, sneaky, and can blend in wherever she hides. My daughter finds these qualities admirable. In Totoro, the soot gremlins live in the shadows in an abandoned house and move away when they decide the new family that moves in is nice. Soot has decided that we are nice, but rather than moving away, she is spending far less time hiding.
Soot is a manx, and she has spina bifida too! The mutation that leads to the shortened or absent tails in manx cats can also cause spina bifida or other spinal abnormalities. In dogs, spina bifida is most common in bulldogs. Dogs and cats of any breed can be born with spina bifida, but it is very rare. Just like humans, the severity varies with each case depending on the amount of nerve involvement.
Soot has spina bifida occulta, which is the least severe form of spina bifida. She can use the litter box and walk independently, but her back legs are weak so sometimes she hops and wobbles, especially when she is tired. Even pets with more extensive special needs can live wonderful lives too!
We are so happy to have Soot as part of our family. My daughter loves having a pet who shares having spina bifida.
I set up a page Soot the Kitty With Spina Bifida to help raise awareness of spina bifida in humans and in pets. Neither Soot nor my daughter let spina bifida stop them!
 |
| Though sometimes everyone needs a good nap! |
(A shorter version of this post was originally posted on my personal blog.)
Friday, February 7, 2014
My Open Letter To Expectant Parents:
Greetings !I spent so many days trying to think of a way to introduce myself to this blog. I wanted to be entertaining yet, informative and reassuring yet, not sugar coating anything. But then I realized no one out there in internet land really knows me or my story. So it doesn't really matter how I start off! Because if you are reading this blog you don't really care about me, you are here because at one point in your life, you heard those two little words that forever changed everything: Spina Bifida.
Allow me to start with an excerpt from my own blog that I would use to keep my long distance family up to date with my Baby #1 while I was pregnant with twins - aptly dubbed Thing 1 and Thing 2:
Dear Thing 1 and Thing 2,
My mind raced with fears and worst case scenarios. How could this happen? What did I do wrong? Were you in pain? What was your future going to be like? Then suddenly amongst all my panic of doom and gloom I realized something I must never lose sight of again - You are my babies. Both of you. You are my little miracles - and it is not my job, but my absolute honor to love you both no matter what. I suddenly felt so ungrateful and selfish for all my negative thinking. Who was I to limit you before I even laid on eyes on you? Who was I to question what God has in store for us? From that moment on I promised you that I would stay positive while we sit and wait. I promised you I would not let this diagnosis define you nor will I let it overshadow your arrival Thing 2. I realized Spina Bifida was not the end of the world and we would happily adjust to whatever 'new normal' our life would be like once you two arrived.
Well My Thing 1 and THing 2, no one ever said parenthood was going to be easy. A week ago, I thought the hardest thing I would have to deal with was having not 1 but 2 (ok, 3) colicky babies. It's funny how things can change in the blink of an eye. Just know that you two have a whole team out here pulling for you guys and praying for your safe arrival. You have a whole, big, loud, obnoxious family ready to love you and spoil you and secretly fill you up on candy when mommy is not looking. You two, along with your big brudder Isaac, are our precious, little perfect snowflakes and your Mommy and Daddy love you very much - today - tomorrow - and everyday after that.So rest up in there Little ones and enjoy your final months of peace and quiet. I can promise you wont get much of that out here. :) Thing 2, keep an eye on your Buddy in there for us. Thing 1, get ready to be grounded for all the worry you put your Mommy and Daddy thru the past few days.
As for you Isaac, You just continue being the amazing little creature you are.
Odds are if you are reading this, you may be pregnant with a little one diagnosed with SB and you slightly freaking out right now. This entry is for you! Also like myself, you probably googled Spina bifida - against everyone's advice to stay off of the computer - and happened upon this blog. Perhaps someone referred you here to see all the beautiful babies and smiling faces of Spina Bifida. And maybe, just perhaps, you are still on the fence of whether or not a child with special needs is something you are capable of handling. I am here to reassure you that every child and person with SB has had parents who stand exactly where you are today. We all freaked out, we all cried, we all doubted our capabilities - yet for every person living with SPina Bifida today - we all got over OUR fears and became a stronger parent for it. You can do this too!
The greatest advice I ever received when I was pregnant with my twins (now renamed Jake and Lucy)- and Lord knows I got A LOT of advice! - was that one day I would wake up and SB wouldn't be such a big deal. Back then, I remember thinking the CHOP nurse who told me that was crazy! And then one day it happened: I ran out of diapers. Keep in mind I now had 3 babies under 3 years old and we go through A LOT of diapers!! I thought "Oh Crap! We are out of diapers, I have to run to the store!" I never thought Oh Crap! Thing 1 has SB and now we are out of diapers! or Oh Crap! Thing 1 has SB, how can I go to the store? It was just the simple realization that life was going on anyway - regardless of Jake's SB or not. I was still going to run out diapers, I was still going to have to make dinner, I was still going to sing silly songs to my kids and play dress up. Most importantly I realized I was still a mom - and those babies needed me to be the best mother I could be.
I always said if I could have met my Jakers when I was pregnant with him I would have never cried a single second over his diagnosis. So he has some issues - his crazy-temper tantrum-screaming all- the- time-hides-food-in-her-toy-box twin sister is on track to have plenty too :) To know him is to love him. His smile, His crystal blue eyes, His belly laugh, his ridiculous Sean Cassidy-esque hair - he is completely perfect in every way. Sure his feet are a bit funky and he constantly has a stinky diaper, but I wouldn't change a thing about this lovable creature…well, other than his ability to fight off a sleep like it is his job!So Mama or Daddy if you are reading this and wondering how in the world life is going to go on - or how can this happen to you - I am here to tell you YOU CAN DO THIS.
So get up, strap on your big girl (or big boy) pants and get ready! Because this baby - YOUR BABY - isn't going to take any mercy on you! He or she will be here in no time and your heart will be stolen the second you meet! And very, very shortly after you will be wondering what the heck you were so worried about…Just don't forget to buy plenty of diapers! <3
Wednesday, January 29, 2014
Up and Running
This blog has been dormant for the most part for the last little while.
But not for much longer!!!!!
Get ready blog readers. We are getting up and running again!! We added some new writers and still have some old writers.
We are looking forward to using this as a great resource again!
We apologize for the long lag in updating. Life gets in the way sometimes.
But not for much longer!!!!!
Get ready blog readers. We are getting up and running again!! We added some new writers and still have some old writers.
We are looking forward to using this as a great resource again!
We apologize for the long lag in updating. Life gets in the way sometimes.
Wednesday, June 13, 2012
United by Spina Bifida
If you don't already know about United by Spina Bifida, look us up on Facebook!
We have a discussion group & resource page!
Group: United by Spina Bifida
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